please forward the link to the review as we believe it highlights not only gaps in the knowledge but gaps in awareness
Cece wrote:This is an older thread. Bumping it because the latest edition of the Cochrane review on CCSVI came out in December.
It can be found here http://onlinelibrary.wiley.com/doi/10.1 ... 2/abstractAuthors' conclusions
There is currently no high level evidence to support or refute the efficacy or safety of percutaneous transluminal angioplasty for treatment of CCSVI in people with MS. Clinical practice should be guided by evidence supported by well-designed randomised controlled trials: closure of some of the gaps in the evidence may be feasible at the time of completion of the six ongoing clinical trials.
None of the current research meets the Cochrane review standards.
Is there any research planned or now underway that will meet those standards? Why did the six ongoing trials not meet the standards?Our searches retrieved 159 references, six of which were to ongoing trials. Based on assessment of the title or abstract, or both, we excluded all of the studies, with the exception of one which was evaluated following examination of the full text report. However, this study also did not meet our inclusion criteria and was subsequently excluded.
BMC Neurol. 2011 Oct 26;11:132. doi: 10.1186/1471-2377-11-132.
Chronic cerebrospinal venous insufficiency in multiple sclerosis: clinical correlates from a multicentre study.
Bastianello S, Romani A, Viselner G, Tibaldi EC, Giugni E, Altieri M, Cecconi P, Mendozzi L, Farina M, Mariani D, Galassi A, Quattrini C, Mancini M, Bresciamorra V, Lagace A, McDonald S, Bono G, Bergamaschi R.
Department of Public Health and Neurosciences, IRCCS C, Mondino National Institute of Neurology Foundation, University of Pavia, Italy. email@example.com
Chronic cerebrospinal venous insufficiency (CCSVI) has recently been reported to be associated with multiple sclerosis (MS). However, its actual prevalence, possible association with specific MS phenotypes, and potential pathophysiological role are debated.
We analysed the clinical data of 710 MS patients attending six centres (five Italian and one Canadian). All were submitted to venous Doppler sonography and diagnosed as having or not having CCSVI according to the criteria of Zamboni et al.
Overall, CCSVI was diagnosed in 86% of the patients, but the frequency varied greatly between the centres. Even greater differences were found when considering singly the five diagnostic criteria proposed by Zamboni et al. Despite these differences, significant associations with clinical data were found, the most striking being age at disease onset (about five years greater in CCSVI-positive patients) and clinical severity (mean EDSS score about one point higher in CCSVI-positive patients). Patients with progressive MS were more likely to have CCSVI than those with relapsing-remitting MS.
The methods for diagnosing CCSVI need to be refined, as the between-centre differences, particularly in single criteria, were excessively high. Despite these discrepancies, the strong associations between CCSVI and MS phenotype suggest that the presence of CCSVI may favour a later development of MS in patients with a lower susceptibility to autoimmune diseases and may increase its severity.
[PubMed - indexed for MEDLINE]
Free PMC Article
1eye wrote:I could have been more conscious, and maybe being more responsive to requests to breathe deeply, etcetera, would have been helpful, but I do not think there is any need for a person to feel, or remember feeling, ballooning.
When invasive procedures are being tested, only large studies will benefit from randomization.
MarkW wrote:For me, the first trial needed is a multi-centre one using agreed tools and an agreed list of veins. This would tell us the incidence of CCSVI syndrome in the veins of pwMS. Do you agree???
Cece wrote: MarkW, although did I read that correctly that you think the Hubbard Registry data is invalidated?
MarkW wrote:Cece wrote: MarkW, although did I read that correctly that you think the Hubbard Registry data is invalidated?
"Most doctors investigate fewer veins than DrS so for me that invalidates their data - they may be sub-treating." I was sub treated in June 2010 as there was no better information. If Interventionists are sub-treating in 2013 that is a problem for people paying for de-stenosis.
"I realise that means the Hubbard Registry data cannot be combined with DrS's and maybe others data". To combine data (as Cochrane does) requires a similar method to be used. I do not know if all doctors on the Hubbard Registry are using the same diagnostic tools or treating the same named veins, so I do not know if the data is scientifically combinable. Do you know any details?
I agree with you that pwMS seeking 'de-stenosis by venoplasty' need to know that the best diagnostic tools are being used on named veins (long list) in which stenoses have been found. Then we need to know that all the stenoses found are treated using the best methodology. I feel we pwMS are a long way away from this at most clinics. I hope that the leading experts in CCSVI start giving us answers in Poland.
To combine data (as Cochrane does) requires a similar method to be used. I do not know if all doctors on the Hubbard Registry are using the same diagnostic tools or treating the same named veins, so I do not know if the data is scientifically combinable. Do you know any details?
Hubbard Foundation CCSVI Registry
contact us for more information:
Red = on-hold pending FDA exemption (IDE)
David Sperling MD
Director, Columbia Endovascular Associates 16 East 60th Street, Suite 360 New York, NY 10022 phone 212-326-8874 fax 212-326-8824
Louis Solis, MD
Valley Endovascular Associates
One Webster Avenue, #307
Poughkeepsie, NY 12601
Dayton Interventional Radiology
( website: http://www.daytonir.com ) 3075 Governor's Place Blvd, Suite 120 Dayton, OH 45409 937-387-7094 web@daytonIR.com
N County Radiology
Donald Ponec, MD Interventional Radiologists Contact: Suzie Cretney
Hector Ferral, MD
James McGuckin MD
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